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MrsDSB

MrsDSB

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i am new to the site. i not sure where to start. i am a mom and a new grandma. i am 41 and i have been having grand mal seizures for over 5 yrs. now. my new grandson is the reason i decided to find a spot where i could talk to someone. i have felt so weird and alone for these 5 yrs. there isn't anyone in my family with the problem i have. it's hard to talk to my husband because he sees them but he has no clue what i go thru... but i still love him anyway. he tries so hard to understand and help. the doctors are not even sure what i really have wrong with me. i have been thru several drugs. i really haven't found anything that helps so far. i thought since the doctors didn't really seem to be too interested in listening to me, i thought i would find someone who would and could relate.:banana:
 
Hi MrsDSB

Have you considered starting an E journal? So that you might figure out what is triggering your seizures? It would help you determine how often they occur. And possibly find a pattern to them.

Some women have them around their monthly cycle, that's called CATAMENIAL EPILEPSY.

Or, it's possible that you are allergic to a type of food, and that's the cause of your seizures, and you don't even know it. You might consider looking into some of the diets here--not for weight loss, but to help control the seizures. There's the Ketogenic, LGIT, Modified Atkins and the G.A.R.D.

Do you know what caused your E? Was it the result of a brain injury? Or, was it like most of us, and just show up out of nowhere, with no known cause?

If you want to start an E journal, let me know, I have a pretty detailed list of what you ought to put in it........and the doctors will end up thanking you for it, because THEN they will be able to figure out the patterns.

Keep in mind--YOU pay the doctor's salary, so if YOU are NOT HAPPY with THEM, then GO DOCTOR SHOPPING.

Btw, welcome to CWE. I'm sure you're going to like it here. Lots of people to meet, friends to make, information to find and learn, nooks and crannies to check out........it's a pretty cool place. Mr B, our host has built us an AWESOME home here.

Take care,

Meetz
:rock:
 
thank you for the info and the hello. yes, about 60% to 65% happen around my menstrual cycle. you know you are the 1st person....out of 4 docs and a specialist to tell me that it even had anything to do with it. i felt like i was going crazy not knowing....or even having a clue!:woot: i've never had a journal before. the info to keep in it would be extremely helpful. i can't remember a thing when it comes to the seizures. i have to rely on other people. and it's funny....i hate to know that people watch me have these things..lol. i forget a lot of things that i would like to tell the doctor.
 
some doctors are just in denial about CATAMENIAL EPILEPSY. However, it does exist. One thing you will need to have done is a hormone workup......but read on for the details of the journal.. It IS detailed, but it WILL help you and the doctors.

And when you go to the doctor's office, write down a list of questions that you want answered ahead of time......and then get them answered!

OK, here's the list for the journal:

********************************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!! Migraines are seizures, too.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the Above List :)


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


Hopefully this helps you.........

Take care!

Meetz
:rock:
 
Hello and welcome to CWE
My daughters were clustered around her TOM as well. Not all but most.
I learned how inadequate nutrition can cause this to happen.
Medication was not the answer for my daughter, however changing her eating habits have been. It hasn't been a quick fix, but over time she is seeing great results. She is 17, and has been dealing with Tonic Clonic seizures for the past 3 yrs.

Neurofeedback was also a part of our alternative treatments, and I believe it was the other key to her improvement. It has helped to stabilize the brain.

There is also a hypoglycemic component to my daughters episodes, so once again nutrition and healing the organs that play a role in this has helped. So my point in sharing this, is that there is still a lot of ways you can be proactive in your own care.

A great book to begin with is Epilepsy:A New Approach

I hope that CWE gives you the HOPE that you need to continue the fight for a better quality of life.
 
that is sssooo good to know about the medication because i have been through quite a few and none seem to help. i have to wait until i can go 6 months without a seizure before they will let me drive again. most of the medications i have tried made them worse or there was no change. if diet can help.....hhmm. then i wouldn't have to worry about how many pills and which pills. it gets really confusing sometimes. at this point, i will try just about anything for just a little...tiny teenie little bit of relief. the driving thing makes me crazy because i'm the mom constantly moving from one place to the other.
 
Hi MrsDSB, and welcome!

I first started having seizures in my mid-30s too. It took me a while to get up to speed on what was happening. I've found that this site is great in providing not only answers, but questions too -- questions to ask the doctors (and myself) in order to be proactive about my care. I hope you will take advantage of the wealth of information here, and add your own experiences to the mix.

Best,
Nakamova
 
i have found out a few things even the doctors failed to mention. it is ssoo nice to know that things are really NOT as bad as i think they are. it is really hard when no one can give you an answer on anything really. i was really hoping the neurologist would give me some information. boy was i wrong. he didn't even tell me as much as i learned after my 1st post.
 
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